Brace yourself. I’m about to do what I’ve done for so many of my past blog entries—apologize for being gone so long from this written world, explain whatever misfortune has recently befallen me because of the rotten chronic illness I’ve got, and vow to do better as a blogger.

So here we go. Again. I am sorry for being absent from this blog. But unfortunately I’ve been having quite a time of it. Starting in July, my sarcoidosis began to flare. The pain in my head quadrupled. I wasn’t able to get out of bed. To make things worse, a combination of the neurosarcoidosis in a particularly non-sexy manifestation called diabetes insipidus along with the side effects of a medication to control this weird symptom of weird disease caused my blood sodium levels to drop to dangerous lows. Who knew that sodium is necessary for proper cardiac and neurologic function? I sure didn’t, but I learned quickly, when my heart began racing so wildly that my defibrillator kicked in and paced my heart for nearly 48 hours straight.

I couldn’t cope at home. So I wound up in the hospital, for 33 long days and nights. They took very good care of me. My doctor and his team of nurses are truly extraordinary, both in their skills and their kindness. But, still, it was the hospital. I was hooked up to a pain medicine pump. I was poked and prodded, given intravenous steroids that made my moods erratic and mysterious. Even the intravenous drip from the pump couldn’t contain the exploding pain in my head. I’m sick of calling this particular affliction a headache. It so minimizes the catastrophe in my head—and the catastrophe it wreaks on my family’s life. (I just might have a contest to see who can come up with a better, more severe sounding word than headache for something that lands me in the hospital for over a month.) There were bright spots, of course. My sister came out for a week to help Jay and Andrew and me make it through this ordeal. So did my parents. Overall, the month was bleak. But I improved enough to make it home, and now I’m slowly regaining a little bit of all the strength and stamina I lost by laying flat on my back for 33 days. It’s millimeters, not miles, a day.

The problem with landing in the hospital for a month or two every year or two (or a couple of times a year, depending on the disease’s fickleness), is that it becomes routine for everybody else. Except me. At least 75 percent of the nurses remembered me. This was nice, but it made the whole process feel disarmingly familiar. Jay and Andrew immediately went into crisis mode. Jay figured out a way to sleep at home with Andrew and make it to the hospital by 5:30 AM for the doctor’s morning rounds. It involved sleep deprivation. Jay and Andrew exhausted our town’s to-go options and we ate dinner as a family in my room most nights. Jay texted all my close friends updates about my condition and I got lovely responses, which all included some version of, “It really sucks you are back there.” But my terrifying pain, my loneliness, my anxiety that I would never get out, never be able to get away from the rank beast of pain crouched in the corner of my brain, felt all new to me.

Coming home was hard. For a week, I literally could not stop crying when I spoke to people. Their kindness, especially, did me in. I had the shakes for a good while too, and I seemed to have picked up a nervous tremor that I cannot yet ditch. I had to face Jay’s exhaustion and Andrew’s pain at losing his mother for a month with no warning and no guarantee that it won’t happen again.

So while in one sense, I could plug this blog post into my familiar template, and I joke about “here we go again,” in another sense, this is all terribly wrong. This trauma was unique. It may fit the narrative flow to classify it as “another one of Rebecca’s long hospitalizations.” But for me, it was a month of pain, my month of pain, which was like nothing that came before it.

I’m tempted nonetheless to follow my old format and promise you that I’ll be back here, writing X days a week. But I won’t. I can’t. I am creeping back to a life not spent entirely in bed. I only cry occasionally now. But Jay, Andrew, and I are not back to normal. We are carving out a new place for ourselves in Chronic Town. I’ll write again when I can, and I’d love to hear from you. Keep me in your thoughts, please, as I try to figure out what recovery looks like.

So, what would be a better word for headache? Can you think of any word or phrase that does a better job encapsulating the severity and duration of mine?

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8 Comments

kathryn scruggssaid,

Cranial explosion? Monster head? Firehead? You are right that there have to be better names for greater intensity of pain. I am thinking of you and your family and wishing you steady improvement. Kathy Scruggs

Rebecca Stanfelsaid,

Skull shriek? Brain eruption? Nah, cranial explosion is better. I hate that you’re going through this, and am keeping you and yours in my thoughts. Here’s to hoping those millimeters make quick work of stretching into miles.